Transcript AFL Poster Presentation for the XVI International AIDS Conference

Divergent views regarding adherence to antiretroviral
therapy between clinicians and their patients in Dali,
Yunnan Province, China:
Preliminary results from the “Adherence for Life” study
L Sabin, D Hamer, M Bachman-Desilva, H Heggenhougen, K Xu, Y Yuan,
W Fan, L Seton, T Li, W Wu, C Gill
Background And
Objectives
•
•
•
Methods
• Context
–
China has one of the fastest
growing HIV epidemics in the
world
China is rapidly scaling up ART
but treatment programmes are at
an early stage
Among Chinese patients on ART
–
–
–
Phase I (qualitative research) for
ongoing longitudinal intervention study
(“Adherence for Life”)
• Study Site:
–
–
Dali Old City, Yunnan Province, China.
Population 3 million, mostly rural
farmers
Population is mainly ethnic minority
(Bai)
Primary route of HIV infection is drug
use and commercial sex work
–
–
Little known about levels of
adherence
Little known about factors that
affect adherence among Chinese
HIV/AIDS patients
Little known about how patients
and doctors view barriers to
adherence
• Study population
–
HIV patients at Dali Second People’s
Hospital HIV/AIDS clinic
Relatives and friends of patients
Doctors and nurses caring for
HIV/AIDS patients in Dali
–
–
Objectives
Dali
• Data collection
– Qualitative research project
• Focus group discussions (6)
• Key informant interviews (45)
• Semi structured question guides
– Conducted in Mandarin
– Interviews were recorded and
translated into English
• Analytic methods
•
•
•
– Themes were coded and analyzed
using NVivo v. 7.0
– Responses of different study groups
were compared (patients vs.
doctors/nurses)
– Selected responses were quantified
by study group
– Key quotes were selected to illustrate
contrasting views
Identify positive and negative factors
affecting adherence
Obtain contrasting views regarding
adherence between patients and their
clinicians (doctors and nurses)
Generate preliminary adherence data
for use in longitudinal study
Results
What patients on ART report
What doctors/nurses report
(N=28; M = 16, F = 12)
(N= 9; Doctors = 6, Nurses = 3)
Adherence levels
Adherence levels
• The majority of patients admitted to some degree of ART non-adherence
• No patients reported consistently poor adherence
• Most patients will tell doctors about missed doses, but some will not
• Doctors/nurses believe that most patients have consistently
excellent adherence
• Clinicians believe they know patients’ adherence but recognize
some will lie, especially drug users
Clear admissions of nonadherence by sex and type of
non-adherence
Patients' statements about their
adherence to ART
7%
25
Extra
"Perfect"
Number reporting each type
Early/Late
18%
Vague statements
of non-adherence
Clear admissions
of non-adherence
20
Missed
15
10
5
75%
“Some patients, maybe due to the time constraints. . . may not take them
until 10:00. but they won’t miss doses. Many patients are like that.”
Doc #1
[About employed patients] “They value their lives a lot. They will
definitely take their medicines.” Doctor #2
“The 20% with the lowest adherence…they miss 3-5 doses/month.”
[=92-95% adherence] Doc #5
“We haven’t yet encountered patients whose adherence is poor here. . .”
Doc #6
“I think the AIDS patients are better in their adherence. The patients I
have contact with are all good.” Nurse #1
0
Men
Women
Sex of participant
“I went out to help my friend hold his wedding, so I forgot.” Male patient #1
“You’re talking about remembering every day. Actually, sometimes it’s hard to
achieve that. It’s hard to avoid forgetting occasionally. . .” Male patient #2
“Sometimes because I watch TV, sports, news, I’ll forget when it’s time to take
the medicine.” Male patient #10
Members of
the AFL team
in Dali
“I was playing mahjong and I forgot to take the medications…I was playing,
playing and I forgot.” Male patient #15
“I asked my sister to go shopping with me in the supermarket. We bought many
things and returned home late. I had missed my dosing time, so I didn’t take it.”
Female patient #4
“I had to make the guests some food, so I forgot.” Female patient #7
[When asked if any had missed the time to take a dose] “Yes, it has happened.
Yes, it has happened.” All six male patients in a focus group.
[When asked about telling the doctor of a missed dose] “I wouldn’t…. I’m afraid
he’ll blame me. He will say, ‘Since you don’t treasure your life, don’t ask me to
save you again.’” Female patient #4
Adherence factors that patients emphasize
• Fear of stigma directed at family members and themselves
• Difficulty remembering
• Interference with work schedule and activities
“If they look down at me, then they’ll definitely look down on my family. These
damn farming communities are just like that.” Female patient #2
“I don’t want anyone to know what medicines I’m taking. I even changed the
bottles. I did. You might say it doesn’t really matter, but I still have a child.
He’s young. He still has to go to school. My biggest fear is doing something that
would have a negative impact on my child’s future.” Male patient #10
[Why worried about getting pimples from ART] “If I get a rash, it’ll itch and
looks ugly.” Female patient #4
“. . . I work overtime. If I’m working high above the ground, installation of
water or electricity. . . In this situation, you really can’t walk away, even if it’s
time, there’s nothing that you can do [to take meds].” Male patient #14
“I’m a business man, and it’s impossible to take my medicines when I’m
negotiating with others.” Male patient #10
“I won’t [forget to take meds]. Sometimes when I have too much fun, I will.”
Male patient #2
Male patient #11 complained of hair loss from ART as making him less sexually
attractive to women.
Acknowledgements
Adherence Factors that doctors/nurses emphasize
• Heroin use
• Mechanics of treatment: pill burden, refill frequency, timing
of doses
• Side effects
“Dr. [#4] told him to come on the 7th but he didn’t. He was caught by Dr.
#4 taking drugs [heroin].” Nurse #2
“The drug users have very poor adherence. All year long they just think
about taking drugs. They don’t care about anything else.” Doctor #2
“As far as I see, the most difficult [factors] include side effects,
psychological pressures, and the time of taking medicine.” Nurse #3.
“Another 20% have poor adherence. . . They fail to take 3-5 doses/month,
and they may stop taking them altogether of their own accord.” Doctor #1
“Things that affect adherence – large amounts of medications, number of
doses every day, having to drink water each time with dose, side effects. .
..” Doctor #6
“When they take the medicines and they have side effects, they’ll tell us
they have side effects and ask us if they can stop taking the medicines.”
Doctor #2.
“[They miss doses when] heroin use interferes with taking the medicines.
They’ll definitely think about the heroin first. . . They’ll forget to take
the medicines.” Doctor #5
[When asked what is problematic about the treatment] “It’s probably
remembering the time and the amount of medicines to take. If you could
get up in the morning and take just one pill, and then have no more
worries, how great would that be?” Doctor #2.
Conclusions
• Patients on ART in Dali are experiencing a range of
challenges with adherence – a number of different
support approaches will likely be needed in coming
years
• There is a gap in adherence levels and perceived
key adherence factors between patients and
clinicians
Thanks to: Mary Jordan, Billy Pick, David Stanton, Neal Brandes, Connie
Osborne, Ray Yip, Ira Wilson, Ann Hendricks, Steven Safren, and Mini Singh.
Special thanks to the medical staff at the Dali Second People’s Hospital as well
as the Dali-based HIV/AIDS patients and their family members.
• Stigma is highly prevalent in this population and
affects patients’ medication-taking behavior
• Family support can play a critical role in
improving the effectiveness of ART treatment